UK Keratoconus Self-Help and Support Association

Hi there,
Just been to an hospital appointment with my daughter who was diagnosed with KC in her right eye 1 year ago.
I was diagnosed with KC in both eyes in around 1980.
After reading lots of information on CXL I mentioned it to the doctor. I wanted my daughter to consider the treatment as it said that it was only applicable in the early stages of KC before the cornea became to thin. Anyhow the response from the doctor was less than enthusiatic - He basically told us not to rush into this procedure as any long term problems with the treatment are yet to come to light! (However if we wait we run the risk of the KC progressing and the cornea becoming to thin)
As anyone else had this kind of response.
Kind regards
Libby

Libby,

This kind of response is not uncommon, especially here in the UK where the procedure is not mainstream yet. The question one needs to ask back is "How long would you say one had to wait before being "sure" you could go ahead? CXL has been used for over 11 years now. Studies are 8 years long and in that time, there has been nothing to suggest that there will be problems. This is not saying that there will not be problems - but to be realistic, one would have to wait over 30 years to be sure of long term effects. This has to be balanced against the sure knowledge of what WILL happen if you do nothing.

In many respects, the cornea undergoes natural cross linking with age, which is why the effects of KC sometimes reduce as one gets older. So in that respect, it is a fairly non invasive procedure, except for the intensity of the UV. And many people who live in tropical regions undergo more than that in a lifetime.

One could say, OK lets wait and see if the KC progresses - but when do you take the plunge? Many people wait until it is too late and the cornea is too thin for safety. Even if you get it done before that point, CXL does not improve the situation, just stops it getting worse, so you still have to cope with difficult to fit corneas from a CL point of view.

It is a tricky balance. I am now seeing patients who appeared perfectly normal when they went for lasik treatment several years ago and now have developed KC. Some are 7 years after having treatment. No-one suggested we wait up to 10 years to see if Lasik was safe and even if they had - I still think many people would have gone ahead anyway.

Interestingly, because there ARE increasing problems with KC developing after laser treatment, some surgeons in Europe are now doing CXL routinely before doing laser surgery!

If you ask me would I suggest CXL for a relative of mine.. yes I would and I have (I have a brother in law with KC). Should it be done on young adults or teenagers? That's a hard one but if the KC is progressing aggressively, then you can more or less guarantee problems that may end up in grafting. Would I have it done myself? Yes I would - but that does not mean that everyone else should agree with me.

If you want to read what difference it made to two people's lives, go to my kcen.org website and read their stories. These were people for whom there was little other choice and they did not do this lightly.

As in everything in life, nothing is straightforward and easy. However, what I would say is that CXL is the first positive treatment ever for KC. Everything else is just damage control.

Its an interesting issue and I hope we do have more discussion about the pros and cons of CXL here.

Lynn

Thanks for your reply Lynn,
As a parent we all want whats best for our children and try to guide them in the right direction.
I know from my experience that had this treatment been available 20 years ago I would have jumped at the chance of stabilising my KC. (my KC progressed rapidly in both eyes and I think that is another concern of mine as I have a fear that history may repeat itself),
I felt rather deflated on Monday after receiving should a negative reaction, however we will see how things progress over the next 6 months and then re-think the issue.
Kind regards
Libby

Libby

I know it was deflating but the job of a professional is to make sure you make the best decision. That often means pointing out the possible cons as well as the pros. Waiting 6 months is a good idea. If your daughter progresses, then points in one direction. If not, then perhaps another wait may be advisable.

In the meantime, read as much as you can on the subject to help you make a balanced decision. Its a real toughie, making decisions for children. But you know what you have been through with KC. That is such valuable experience that any non-KC professional cannot possibly replicate.

Lynn

I've had KC for over 20 years which progressed rapidly resulting in 2 grafts and after Lynn did topiography on my wife we found she has interesting corneas too.

My daughter is 9 and yet to be diagnosed with KC but we have made the decision that we will monitor her eyes every year and have topography and the first signs of KC then CXL it is. Our decision is based on the information this forum has provided since I joined 4 years ago, attending support goup meetings, the support group confrences and being pointed in the direction of case studies such as the ones Lynn mentions. therefore we consider the choice we have made to be an informed one. We may however change our mind as more information becomes available, bt I think that is the case for any medical condition.